I haven’t used this blog for probably a month, possibly more like 2 months. However, something happened this week that has continued to weigh heavy on my spirit. My oldest daughter, a CHILD of twelve, came home from a day of seventh grade. It was an average Monday. I knew a bit of some middle school, tweenage drama that had ensued over the weekend, but I never expected for my kid to get in the car and reveal to her dad that someone had said that she was (and I quote) “A devil worshipping, lesbian. Who was cruel to people.”

Let me stop and say a few things: I have people, in my life, whom I love and adore without question that ARE LGBTQ. I don’t care if they are or aren’t. I would and have trusted them to keep my secrets AS A TEEN as well as to keep my children while I dealt with grown-up stuff like attending a funeral in another state. I have been unnecessarily “patted on the back” for treating them “just like regular people” when they have never been anything else but “regular people” that I also love. So it ticked me off that “lesbian” was included simply because it was clearly MEANT as an insult. But the “Devil-worshipping” part really just made me want to “show out” as a mom.

I grew up Catholic, cradle-Catholic, in the deep south of Alabama. I know that we’re different. I know that people here have been conditioned since birth that anything “other” or “different” is also “evil.” Being Catholic in the south, I may as well have said I was a Pagan as far as most people were concerned. I grew up being questioned by teachers in history class to account for the ages past history of the Spanish Inquisition, about Mary, about teachings of a religion I’d barely grown to understand, invited to services in hopes that I would choose to be saved, thought that boys liked me only to discover they were only hoping to convert me, the list goes on.

That doesn’t even begin to cover the literal crap that my now husband encountered in high school. Let me introduce/re-introduce you to a young Mr. W:

This was circa mid 90-late 90’s. We weren’t dating at the time. We were friends. He got called to the office for every bit of graffiti in the bathrooms. He made lifelong friends out of other kids who stood up for him when people spit on him. Literally, SPIT on him. He was my friend, and probably the most interesting person I’d ever met. He was smart enough that he actually score the highest on the SAT out of every student in the entire school who took it, much to the bafflement of his fellow students and his teachers. He was even published in a book of poetry and won an award from a local college as a high school student, wrote the senior class poem, etc. None of it mattered because of his “style.” His, what? Taste in music? In clothes? In hairstyle? I don’t know. Mostly, I guess, because he was DIFFERENT.

It’s no secret to anyone who knows us or “of us” that we got pregnant with our eldest child before we were married. There were snide remarks from people we thought were friends, from people we thought of as family about it. There were times where we felt like our sole-combined purpose in life was to prove everyone WRONG.

We’ve been married 13 years. We have two additional children. We celebrate holidays with our families. I love his family, my new sister, my new dad, my niece, my cousins with all of my heart. He has a bond with my siblings and my parents that warms my heart. They LOVE him. He LOVES them. He wakes up early and toasts waffles. He goes to bed late, he works hard to make sure we’re taken care of. He checks our kids out of school when they’re sick. He makes better “sick” soup than me if you ask any of our three kids. He sleeps in a twin sized bed, smooshed between a 7/8-year-old and the wall so they aren’t “scared” at least once a week.

I guess I want you to know that we see you. We see you, people who “knew him then” and are astonished to see his beautiful family on his toolbox at work. We see you, those who spit on him, judged him, accused him, believed of him, and know him now as a man who loves his wife, who is his children’s hero and favorite person in the world. We see you, people from our past who believed he was a “devil worshipper” because he was different. And we see you now, you silly, ridiculous tweens who would say such ugly things about our daughter.

We see how much EASIER for YOU it would be if you could convince any person who knows her that she’s “evil” simply because she is BRAVER than you. Our girl has ALWAYS been proud to be exactly who she is, way out loud. And I’m not a moment sorry that that makes you feel insecure. Our children have been raised to stand up for the different, to take up for the underdogs, to be themselves at all costs. And they have been raised to see the good in people. When my child told me what was said about her, we spent a good 30 minutes discussing why anyone would say those things. Were you hurt? Were you feeling insecure? How sad for you to need to attack someone to feel ok about yourself. Then? She went on with her life.

Yes. We let our teen dye her hair. We let her wear her favorite bands as t-shirts. We let her express her own feelings, desires, and style in her clothes (as long as she doesn’t break dress code), and her art, or her room or whatever. I don’t honestly give one, or even half of one whit what other parents think about us for it. Our girl is loved and will always be loved for exactly who she is. You better believe she is corrected when she is in the wrong. Heartfelt apologies are a “thing” at our house. Compassion is a thing at our house.

So we see you, child. We see you and we hear your words and we’re trying to understand where you’re coming from. Maybe one day, you will grow up and the do the same for the other people who come into your hemisphere. Maybe one day you’ll realize that the kids who are willing to see and live outside the box are the ones who change the world. And hopefully, prayerfully, one day you will realize that different doesn’t mean the same as less than, and most certainly not the same as “evil.”

First, let me start this post by saying that if you are currently parenting a tweeny-pre-teen/teen-ish aged child- I. Am. Picking. Up. What. You’re. Putting. Down. Whether you are a single parent, co-parent, or part of a parenting team- this is uncharted territory, is it not? (unless of course, you’ve done this before and recently, in which case, I’d love for us to forge a “me-relying-on-you-for-sage-advice-sort of relationship. 😉 pm me! kay???)

Apparently, my tween-ish/almost-teen-ish daughter has had a multi-child sleepover in the works for her friends the last week or so, but the way it was brought to me was a casual sort of slide into a conversation yesterday that went thusly: “Hey, Mom? Wouldn’t it be kinda cool if I could have like 3-4 friends over all at once? Remember how we did that for my birthday? And how you said I should reach out to more friends at my school??????”

Me: “Yeah, baby, that’d be great! Let’s start trying to plan something, ok? But not this week, because it’s your little sister’s birthday and we have a lot going on, ok?”

Fast forward all of TWO, count ’em, T.W.O. days later and it’s Thursday and I get a phone call from a concerned Dad wanting to know if we’re doing this because he’d like to meet me first. Stop, collaborate and listen: I am not judging him, nor in any way condemning him. In fact, let’s take a moment to let me, let YOU know how much I appreciate the fact that my kid is making friends with kids who have families that love them, care about them, worry about them as much I do about my children, and want to know more about me before letting their most precious gift come stay at my house. , mmmm-kay?

I spent nearly 45 minutes talking with a stranger, a father, on the phone about our values, our lives, our children, because, honestly, it’s important to me that my kids grow up with friends who love them and who they love in return. I have strived to teach my kids to be kind, to quiet the impulsive sides inside of them and listen to a greater voice about the other, to stand up for kids who might be alone, to befriend and be kind to everyone, even if everyone else shuns or laughs at them. They don’t always do this. We’re all human after all, but I try to teach them. I listen to each situation, each day, and point out what I see from an adult perspective: “You’re right. That was a really mean thing to say, but what if that is the only way that child knows? What if no one ever taught them to be kind? What if no one ever says to them that it’s ok to make a mistake?” I always try to reflect on the other side and make sure my children know how to take up for themselves, but also are not jumping to judgments and burning bridges. It’s flipping hard. It’s a dumb show to some- but I love the quote from Michael from The Office that “Everyone deserves a second, second-chance.” You know, just in case.

Nearly 45 minutes I spent on the phone with this man, and not only could I not tell you his name right now (though I know his daughter’s AND her “valley-girl”
name that they gave themselves this year as a joke), I still wish I had told him so much more. I wish I had said that we are a family who believes anyone can be a good friend regardless of their background, where they live, or what they look like.

I wish I had “warned” him that we sometimes come off as “strange.” That I grew up Catholic and Cajun, which is “strange” in the South of Alabama, but that we’re good people who strive every day to do good and spread Good. That Nadia’s Dad is the best Man I ever met, that he loves his children and proves it every single living day, even though many STILL classify him as “weird.” I wish I had said that his family LOVES him and that I’m so lucky to have them in our lives, helping to look after us. That they let him be who he was and that they are amazing and how they make me proud to carry their name into the world.

I wish I had said that I grew up in a family that took in people, we took them in for Thanksgiving dinner or random Tuesdays or weeks at a time and we loved them. My parents fed them, chased them with slimy, boiled okra and yelled, “It’s A SQUID!” grounded them when they were acting ridiculous, Momma sang in the car with them as embarrassingly and unapologetically wonderfully as she did with “just us.” She spoke to them in confidence and never told a soul what they said. They LOVED them and accepted them, and because of their example- I will always strive to do the same. I don’t care if your child loves softball or video games or both. I don’t care if they are sassy or quiet, straight-A, honor roll students, or struggle to comprehend even the basics of math. I don’t care if they dress sweetly or have purple hair and sharpie-drawn “tattoos,” I will love them, and feed them, and if I need to, I’ll ground them, but they will always be welcomed here- because they are a friend to my child.

They see in her the things that I see- her silliness, childishness, goofiness, but also her bravery, her intelligence, her sense of humor, her gigantic, passionate, wide-open, willing heart. Her confidence to be herself in the moment- even if in that “moment” I let her dye her hair a vibrant violet-red (it will fade more than it’s already faded and it’s only hair), Even if in that moment she *thinks* she has a “piercing” when all she has is ONE ear hole that attaches to a cuff that in no way pierces her ear. Even if she draws sharpie-tattoos on her wrists on random Tuesdays, painted her previously hot pink converse shoes sorta-black, is still learning to put on eyeliner. Your child, in some way, SEES her, relates to her, or for whatever reason- cares for her. That’s enough for me.

That’s enough for me to protect them here, to make them feel welcome here, to call you if they should need you here. Sometimes I worry that I come across as the “hot mess” mom. The one who you might secretly think spoils her kids or indulges them beyond what’s healthy for them. Or tells them too much, too soon; But I’m in the business of loving tiny humans into respectable, passionate, COMPASSIONATE people. We do have rules. We do have chores. We do have “oh, no, hun. No youtube, social media, Minecraft, or otherwise until homework is done and you’ve read a book and done SOMETHING else- kind of structures ’round here.”

I hope you trust me with your tiny humans. Even just for a night, even if we’re different and you’d never let your child dye their hair or “pretend” pierce their ear. I wish I had told you that I’d never let them watch maturely rated tv or movies or even borderline material, that for all her bravado and bravery- she’s expected to be nothing but a child here. I wish I had told you, fellow tween-ish parent, that your child would be safe here, and that for all else- we are good.

Tomorrow is officially our last day of “summer.” School starts on Monday and I am so apprehensive. This is the first year that Nadia will not be on the same campus as her younger siblings. The gap between her and the two little ones is oh so apparent this year. She’ll go on to the Junior High/High School campus while Calvin and Lena remain at the Elementary. Her school has exciting things like vending machines and a cafeteria that looks like something I have only ever experienced on sitcoms and movies. I went to the same school from Kindergarten until graduation. We all ate in the same cafeteria with the same fold-out table/stool combos. I don’t know how to do junior high drop off/pick up, where her locker is, who her teachers are. She looks so grown up, and at the same time so vulnerable as she goes through that stage where she is trying to find herself. Her style, her likes, her dislikes, her personhood.

She has violet/red hair that we dyed a few weeks ago, and it’s already starting to fade. An earring with a chain that connects to an ear cuff(both of which I caught some side-eye for from other parents at orientation). She’s getting better at putting on eyeshadow and she loves sarcastic t-shirts. I feel so anxious. How will the year go? How will she do there? Will she let what the mean kids say bother her? Or will she be more confident and self-assured than I ever was? Will she remember how to play the trumpet she’s barely touched all summer? Will she take the year seriously? Keep up in her classes? Make new friends? Keep the ones she’s had so far?

And then, there are her siblings.

Will Calvin have a better year? Does he need an eval? Will it matter to his teacher this year that he struggles to sit still? That he’s always 3 feet or more behind his class? That he can’t be rushed? That he doesn’t follow through on directions the first time they are given always? Will they care that he reads and enjoys books beyond his grade level? Will they see what I see? A smart, sensitive, but God-love-him, cannot-be-rushed-slow boy? Will they care that he just needs a little more time to process instructions or will they get frustrated with him? Rush him? Push him? He doesn’t want to go, and every day as we draw nearer he has said, “I wish school would never start. I wish Summer would never end. I don’t think that I can do Sixth Grade. It is impossible for me.” Nevermind that he is only going into THIRD grade. “Why are you so worried about Sixth Grade, Calvin? You don’t have to do that yet. You will be able to do it when it is time for you to, but for now, we only have to think about Third Grade.” But he worries all the same. He gets the anxiety honest, but I hope against hope that his teachers will love him. That they will see in him, what I see. That they will recognize his sensitivity as a strength and not a weakness and that they will be kind and patient with him, easing his worries and making school enjoyable for him as it used to be. I hope he will make new friends and that they will want to come hang out at our house.

And then, there is my youngest. I didn’t email her teacher this year as I did last year’s. I don’t know what to expect or if it’s right to have expectations. I’m worried that if they expect misbehavior that will treat her as such and she’ll pick up on it and make it so. I made a very quiet, slight suggestion that perhaps her teacher might find that she does better seated towards the front since our last name usually places our kids in the very back row. But then I quickly amended, “But maybe not! Let’s wait and see!” because she knew and seemed to like the child who was seated directly next to her. “He is always nice to me and doesn’t let other kids be mean. He is nice to everyone,” She confided in me afterward. When his mother asked her if she was friends with the boy she only said, “Um maybe sometimes. I have a Five Nights at Freddie’s Shirt!” But it’s usually afterward that she will tell me more details.

I hope that this year will put my anxieties to rest and that she won’t have a meltdown or refuse to work… or ……anything. It pains me to admit that I feel that way. That I hope this is the school year to lay my worries to rest.

School starts on Monday. That’s the day after tomorrow and I am so very anxious.

Last night’s dreams were all of water. Cold. Murky. Gray. No shore. Just instantly deep when you stepped off the land. At times, there were was no land in sight, just endless water. I know enough of psychology, have read enough “dream journals” to know that water is a signifier of one’s emotions. I think even without that knowledge, I would know it’s my anxiety just based on how I have felt ever since I woke up this morning.

In all of the dreams, I was already in the water. Treading water. Sometimes the land was in sight- salvation, just on the edge of my vision. But in some of the dreams, there was no land there. In the worst of them, it was not me alone, but my family.

“How will I keep my children afloat?” I fretted. “How will they survive? There is no shore, they cannot wade in, slowly, as they are comfortable. It is simply sink or swim.” Hostile.

In the worst of the worst- another family is there- but they have a safe haven. A sort of strange square mat, that floats, just below the surface where they can play and feel safe, secure in their footing. And I have to tell my children that I don’t know where they got it, but it isn’t ours.

That’s what being a parent with real anxiety is like. Hostile. No shore. Gray. Murky. Cold. And in the midst of it, you have to somehow find something of value to offer your children and make them not only feel safe, but BE safe. You have to find security for them, even when you feel like you have used everything inside of you to merely tread water.

I have felt sick to my stomach all day. Even in the waking world. Even after researching if such a floating mat even actually exists. I feel like I’m treading water even as I sit here. What will we do now? What is coming? Is that land I see there? Is there a shore? Or must we simply keep afloat as long as we’re able………………

Now I remember why I stopped blogging for so long. It can be so refreshing to really just “get it out there,” as they say, but then… you know… it’s OUT THERE. No takesy-backsies. Everyone’s already read it and they’ll know if you go in and change it. Directly after I got the notification that someone read it, the anxiety set in. Is this too personal? Should I hush? What if the way I worded something offended somebody?? I forgot to add such and such which furthers my point… And so it goes on. A lot of my personal anxieties would clear up if I was ever able to let things go. Just release it to the metaphorical winds and well there you go, nothing to be done about it now.

A few things that I wanted to clarify-

None of my daughter’s Aunts, Uncles, or grandparents have been the ones to make rude comments. My husband and I are very lucky in that we’re both very close with our siblings and our parents. While we certainly hear comments and get “the looks” from others, they primarily come from strangers or distant family members that we don’t generally communicate with anyhow. I feel like this important to clarify because it’s not everyone that has a family that makes that much of an effort. They’ve all been a part of her life since she was a baby, so to them, it’s more like it doesn’t matter- she’s stuck with them anyhow and they’ve already put her in their hearts regardless, come what may.

The studies on girls on the spectrum ARE new, and it’s more my hope to educate people on the differences as well as bring people into what we’re dealing with here on a daily basis. I’m not trying to make anyone feel scolded. It’s not really fair to expect people to be in the know or read complicated situations when we’ve kept pretty private about the majority of it. Our immediate families have been there every step of the way as well as our closest friends. They’ve been learning along with us how to help and how to answer questions, some that we all have and some that others might ask us.

Some things I often worry about-

I often worry that people will read words like “mild,” and dismiss the struggles we face as nothing to worry about. I often worry that since we don’t have definitive answers, much less any to give, that we’ll be dismissed from the community of people who KNOW what they are dealing with. This one is especially important when we’re talking about girls since all the newer studies are showing that they often get overlooked due to their desire to fit in, make friends, and their ability to mask and mimic their peers.

I have often felt like people are implying I should calm down, stop worrying, and there are times when I’ve told myself that I needed to do those exact same things. Don’t make a mountain out of a molehill, so to speak. But if it was your child? Your gut? Your private conversations with God? Would you?

I tend to hold things inside for a long time and then the pressure builds and I dump it all at once. Details get lost in that sort of expressive process. It can make my reactions seem extreme or explosive, and sometimes I may get swept away in the flow of the release and forget to specify or clarify, and then hurt someone unintentionally or give the wrong or incomplete impression. This, I think, is ultimately what led to the deletion of previous blogs. I think perhaps this time I may just publish weekly or bi-weekly amendment posts.

If you’re following, if you’re maybe dealing with some of the same things and need someone to dump your thoughts out to, please feel free to private message me. I’m no expert. I can only relate through our common experiences, but I’m always willing to listen.

I used to blog, ages ago. I went through several phases with a blog. You could even say that I grew up through blogging. I was a young, new mother, married for the first time, also young….. Felt like no one really understood or “got” me, fancied myself a wordsmith of sorts. It was a thing that I did. Like when I took up sewing and monogramming for a few years, or that summer I was a henna artist, and the few times I was a face-painter…. That time I took up photography for a bit. It was a thing that I did and it got me through. I saved a lot of it to a hard drive before deleting it from the blogosphere, and looking back on it is a bit like looking through old diaries from my teenage years. *Oy* Did I mention I was young??? I did, however, make several friends through blogging that turned out to be lifelong lovelies, and that at least is something I will never regret.

The lasting lovelies and I stay connected via Facebook these days, believe it or not. We watch each other’s children shoot up like weeds in the summertime, mourn the passing of each other’s loved ones, email each other in groups or one-on-one to discuss deeper matters not up for public opinion. Still, on nights like tonight, when the wheels won’t stop turning, when I’m moved to go on and on for pages about things that are niggling at me, I really miss blogging. It was a diary, really, they all are, but it allowed people to weigh in and to share in your story. My story has felt rather lonely sometimes in the last few years. Maybe, ultimately, that’s what has me sitting in this chair, typing furiously at the keyboard. I have kept silent about a lot of things, told only those who are VERY near and dear, and kept only surface worthy things on the surface.

Sheesh, two paragraphs in, and I still can’t even really think of how to start this off. Perhaps as much as I think I’m ready to share this with anyone with net access, I’m not really…. but here it goes anyhow. This is the story of the last 6 years, of which we’ll skip a good deal or at least, sum up. This is the story of my youngest daughter. I’m not saying the blog, should it continue past this late-night-written mini novella, will continue to be solely about her, but this post, for certain is.
(When I hit *enter* just then, my word processor skipped over to a fresh page… that’s a good sign.)

This is my youngest daughter for those few strangers who might wander here. She’s always been a gorgeous baby with her orange hair and dark blue eyes. She was a temperamental toddler, as toddlers often are. It was somewhere around the age of 4 that we started to notice she wasn’t quite grown out of her toddler particulars such as tantrums over the color of her plate or the way you cut her toast. And she wasn’t a huge fan of other people; she would run to the end of the hall and hide her face from visitors. We chalked a lot of it up to her Cajun/Irish roots (hello temper!), others assured us it was just because she was the baby. You get the general idea, we shrugged it off, no big deal.

When she started Pre-K, we started to hear and see other things. She began refusing all but certain foods down to which brand or color of foods she would eat. Such as only the “red” Doritos, only cheese pizza from the brown box, even though she’d eat pepperoni on its own, only peanut butter and jelly sandwiches. She began refusing to wear certain clothes. Anything with buttons, grommets or metal pieces “hurt,” lace was too itchy, no socks at all thank you very much, and very particular about shoes. At home, she would strip down to her undies and refuse to wear anything at all except a “soft blanket” even in the winter. She began to form attachments to particular stuffed animal “friends” who had to go everywhere with us.

From her teachers, we heard that she didn’t really like to play with the other children. She wouldn’t play on the playground or in centers with other kids, she wouldn’t play outside even on her own and instead would only sit on a bench by herself. Well, we said, she’s never been anywhere without her older siblings or her grandmother or one of us, so she’s probably just needing some time to adjust. She began Pre-K in August and didn’t claim a friend or remember another child’s name until March. In the meantime, we were also requested to have her hearing checked by her teacher multiple times, who then brought her concerns to my mother that surely this child could not be that effective at ignoring her. There was also an occasion where I was called to pick her up early because she had had a tantrum over being itchy and was unable to be calmed until she was in the principle’s office waiting for me to come get her. Her ears were fine, there was no rash or anything to cause itchiness. She was fine.

In Kindergarten she was often put on negative behavior “colors” for not paying attention, not focusing in class, playing with her fingers, playing with her hair, playing with her face, playing with her pencil, not following directions, not finishing her work. She became obsessed with her color for the day and would wake me at 2 am to ask whether I thought she’d be able to be on a “good” color that day. She didn’t seem greatly upset so much as just flatly curious. As her older sister is ADHD, we thought maybe that was all there was to it and had an evaluation done.

“Not ADHD,” said the pediatrician. “Seems like maybe something else,” and so we were referred to a behavior therapist. By this time we were halfway through the school year and there were meetings with the school counselor and her teacher and then therapy to try and get things going more smoothly. She continued to get in trouble for consistently being the last to finish her work, she was compulsively erasing and starting over on her favorite part- the drawing bits. We tried a new behavior/point system. It worked for a bit and then didn’t so much anymore as she lost interest. We implemented awards at home for making her points at school, which also helped most days. She was not struggling academically, but still unable to focus. She would become distracted by playing with her own hair. She’d act up and make goggles or pull faces at the teacher during circle time. A great study of human expression and behavior, if the teacher so much as quirked a half-smile, it was, in my daughter’s mind the go-ahead to continue the silly behavior.

She continued to refuse socks, jeans, or any rough materials. She wore leggings every day. She screamed and cried when we brushed her hair and fought against wearing it up. She switched to only ham and mayo sandwiches and blue Doritos, and NO pizza at all, also no American cheese, or as she termed it- the wiggly kind. She wanted a round waffle for breakfast but would eat the center out in a perfect square leaving the “round corners” because she didn’t like them. She resisted changes, even those as small as a new pair of shoes or a food she liked prepared in a different way. No square waffles then.

After a few months of therapy, it was suggested that she was ADHD as well as OCD and possibly ODD. I brought up Sensory Processing Disorder and went over (AGAIN, probably for the 5th or 6th time) all of her issues with loud sounds (no auto-flushing toilets or hand dryers, scared of loud, sudden noises, overwhelmed by textures in food and clothing, strong smells, etc). Her therapist conceded that may be an issue, but more or less chalked it up to the OCD making her extra sensitive to such things.

I talked to friends and family members. Some wondered with me, others assured me I was over-reacting. Enter one of my long-lasting lovely bloggy friends who asked me whether I’d considered something like Aspergers. A work colleague had just asked me the same thing that same week so I started to research. LLL bloggy friend sent me a link to a Scientific America article about girls on the spectrum. I thought, well, it doesn’t hurt to ask so I brought it up at the next therapy session. I was met with a baffled expression and a reluctant agreement to let me fill out a prescreen form. I think it’s important to understand that I under-estimated on all scores while filling it out. I really sat and thought about each question and the severity to which it affected us and then I’d pick maybe one point lower on the scale unless it was a glaringly obvious deterrent to her day. She scored in the probable. Her therapist said, “Any other child who scored here, I would refer on for further testing, but I really think her OCD skewed these results.” I opted to see the specialist anyhow.

The only open appointment was in December. We were in May. She would be half way through the First Grade before we’d even see the specialist. And so we waited.

We continued to see the local BT bi-weekly. We decided to try medicine. We began with a non-stimulant that helped slightly, or at the least seemed to allow the therapist to actually get her participating in therapy sessions with fewer tantrums and outbursts, and better able to focus on the tasks set before her. With the start of the school year came an unexpected wave of anxiety. She would cry every morning, complaining of stomach aches, beg not to go, throw fits and scream she hated school, and then eventually give in about half way down the hall and then according to her teacher be just fine the rest of the day.

For the first half of the school year, we occasionally got reports that she was doing just great and making improvements. But then we’d learn that she often covered her ears during spelling words or any time the class was spelling/saying things out loud as a whole. Her grades dropped some second semester, but again we were told not to worry, she was still a great student, and it was only a C. She hadn’t made any friends and continued to spend most of her time, happily, on her own. There were a few incidents with swearing. There were a few incidents with her telling another child bluntly that she didn’t want to play with them, and unknowingly hurting feelings. She’d often say that “so-and-so” was definitely her friend because “so-and-so” loved her hair, but whenever we’d see “so-and-so” in the hall they would turn their nose up at her and run off, to which my beautiful orange-haired girl would turn to me and smile and say, “SEE?!”

We finally got to see the specialist and we went several times. In the end, after it all, we were given an hour long report on everything they had observed, thought, etc. This brings us more or less up to date.

She is currently diagnosed as being ADHD combined type, she scored 99.9% likely that she has attention deficits and hyperactivity. She is OCD as well as mildly ODD. She has Sensory Processing Disorder. She is behind about 2 years in her social-emotional development and behaves/responds more typical to a preschooler than a 6-year-old. She doesn’t understand idioms, figures of speech struggles to understand basic social stories and other aspects of abstract thinking. She has “several autistic tendencies.” All of that and a “I can see why you’d ask about Asperger’s, but we don’t diagnose that until age 8, due to development that goes on that time, so if in the next two years she doesn’t start to catch up to her peers…. well you’ll really begin to notice and we’d like you to bring her back for testing for Asperger’s Syndrome at that time.”

See, in the movies and on television, they like to let you think that every case is severe, or clear or direct, open and shut, there’s no denying what we’re seeing here. But, in real life, all you ever hear is that “it’s a process,” and that’s still very vague. It’s a LONG process. It’s a tedious, frustrating, infuriating, crappy process. While I certainly understand the over-diagnosis age we live in, and that you want to be sure…… you just have no idea how adrift and lost you can feel with all the maybes floating around you. You don’t realize how much it’s going to suck. How angry you’ll be. How sad. How confused. How unsure. You don’t realize HOW LONG you’ll go on feeling that way for turns at a time. You don’t realize how many nights you’ll spend questioning whether or not it could really be just you. Are you a hover mother? Are you over-reaching? Over-reacting? Is this the right thing? The right path? Should we see another therapist? Are we really going to medicate our child? Did I really sit through ANOTHER school meeting and cry and embarrass myself and STILL not really get heard? Did they hear me? Are they brushing me off? Did they read Dr. So-and-So’s report? Did I advocate enough? Did I fight hard enough? NO ONE tells you that the process SUCKS. No one says how long it will be, how long you’ll go without answers.

And…so…then, when do you tell people? When do you let people in on the process? I feel like I keep waiting and waiting for the sure thing, for some magical therapist to descend from the sky and say, “Hey, Mama, you’re instincts are right, you were right. This is what you’re looking at, here.” And while we’re fantasizing here, I’d like them to also say, “And here is a clear and concise plan of action!”

Can you really be a part of the community of other families dealing with all this bullcrap if you don’t have a definitive diagnosis? I arrived, tonight, at a point where I just don’t care anymore. This sucks. I read a post about girls on the spectrum and every single bullet point applies to my girl. Girls on the spectrum are different. They are misunderstood, misdiagnosed. Most of our local therapists haven’t even read the article I read on Scientific America. I know because I brought a copy with me, highlighted with all the things that apply to my daughter. Asperger’s and Autism are still widely considered to be “boy” syndromes, with girls only meeting criteria if they are severely deficient in academics or social skills (such as failing or being nonverbal).

Having a girl going through “The Process” means that you will frequently be met with skepticism and disbelief. You’ll have people try to reassure you that they don’t see it. You’ll hear that you’re an over-indulgent parent. That your child is just spoiled, just a brat, just needs a spanking, just the “baby of the family.” just a quirky funny child. You should just force her to eat or have nothing, she’ll get hungry enough to eat whatever you cook, just wait and see. You’ll be the mom getting dirty looks when your child has a meltdown in a museum because someone keeps pressing the button that plays the jet plane noise and train noises and it’s loud and weird, or the mom getting dirty looks in the waiting room because you noticed your child was on the verge of a meltdown and you told her that she had the green-light to say to the other child that she didn’t want to play hide and seek, or that she doesn’t have to let the other children at the playground play with Heart Kitty (a dirty, tiny stuffed pink cat with lopsided eyes that she’s been carrying around everywhere since age 3). You’ll be the mom with the kid who won’t stop complaining, crying, and begging to go to Burger King because “this restaurant smells like old fish!!!” while everyone else was looking forward to seafood. You’ll realize it’s possible to take your kid to the wrong colored sand at the beach. You’ll get upset at family functions because relatives call your daughter a spoiled brat when she frustratingly yells that the mashed potatoes are WEIRD! and LUMPY! and ISN’T HUNGRY! You will have to explain over and over again to well-meaning friends and family that continuing “the process” and therapy where they will learn to recognize, manage, and cope with several of these disorders doesn’t mean that they will just magically “grow out of it” one day. It’s an ongoing struggle to retain your composure and not throw a fit, worthy of your SPD kid trying on jeans, whenever someone dismisses your concerns or tells you that they don’t see it. So to all of you mommas, papas, grandmas, guardians, who are going through “the process” with your girl, or with your boy, you’re not alone. You’re not alone with the maybes. You’re not alone with the “am I’s?????” You’re not alone. Keep fighting. You know your child, better than any person in the world because chances are you’re one of the precious few people with whom your child is comfortable enough to be their true selves. Keep pushing, keep fighting. Keep embarrassing yourself at parent/teacher conferences. Keep researching, and if you haven’t started yet, as I hadn’t really until tonight…. reach out. There’s a community of us, I just know it. I know we’re out there and we don’t know what to call ourselves and we don’t know where we are on this journey, yet, but we exist and we need each other.

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